Virgin Atlantic and the Boeing 787 Dreamliner: Making Dreams Come True at SAVE JON, Inc.

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This week Lisa and Jon are back in the office after a valuable trip to the UK. They met with the UK’s leading scientists and clinicians in PSC treatment and research, including Dr. Roger Chapman, Dr. Gideon Hirschfield, and Dr. Simon Rushbrook, to talk about international efforts to cure PSC. Jon also underwent a cutting edge experimental liver scan at … Read More

Why Give RARE?

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Give RARE Day UPDATE:  SAVE JON is the proud winner of both the 2015 Give Rare Day Social Media Grant and the 2015 Rare Disease Month Promotional Grant!  Many thank to our Give Rare Day donors, those who promoted our posts on social media, all of our supporters, and our hardworking staff.  We are proud to raise awareness for rare … Read More

Honoring Those Who Live To Cure On NIH Rare Disease Day

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Today, February 27, 2015, is Rare Disease Day at the National Institutes of Health (NIH), marking the eighth annual celebration of Rare Disease Day. The observance was first conceptualized by Rare Diseases Europe (EURORDIS) in 2008. It then came to the U.S. in 2009, thanks to the National Organization for Rare Disorders (NORD). At the NIH specifically, Rare Disease Day … Read More

Technologies For Solving Rare Diseases Abound

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With this week being National Engineering Week and this Saturday being World Rare Disease Day, our CEO Lisa Boyette, MD, PhD, has been discussing how engineering and new technology are important to finding a cure for rare diseases such as PSC. You can hear Lisa’s thoughts in an interview with Pittsburgh Technology Council, which produces a weekly radio show called … Read More

SAVE JON: What it means to have a rare disease like PSC

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Most people have never heard of Primary Sclerosing Cholangitis, or PSC. When Jon was diagnosed with PSC at age 21, he learned two things: first, most PSC patients eventually need a liver transplant to survive, and second, until you get sick enough to require a liver transplant (which is really sick), there isn’t a whole lot to do. Right now … Read More

A New Way on Innovation Day!

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Valentine’s Day is done for another year, and today is not only President’s Day, but also Innovation Day. A day dedicated to identifying new and better ways to solve problems and do things. It is fitting that George Washington’s birthday was chosen as the day to celebrate innovation. The first president of the United States trail-blazed the path for the … Read More

Are you a perfect match?

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Love it or hate it, Valentine’s Day is upon us.  For some of us, Valentine’s means buying or making heartfelt gifts for those we love.  For others, it means spending time together.  The more cynical might see Valentine’s as a marketing ploy to encourage people to spend money.  The more optimistic might take a chance on a new date, hoping … Read More

Join SAVE JON for Give Rare Day on March 3rd, 2015!

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SAVE JON is participating in Give RARE day on March 3, 2015! Every donation made helps us to qualify for corporate donor matching and large donations from corporate sponsors! Please visit the site and donate to SAVE JON! #giverare #PSC #GlobalGenes #CareAboutRare #WRDD2015